Patient attitudes towards brain donation across both neurodegenerative and non-neurodegenerative neurological disorders

Chan, Reudi J W; Seah, Sherilyn; Foo, Joel; Yong, Alisa C.W.; Chia, Nicole Shuang Yu; Agustin, Sherwin J. U.; Neo, Shermyn; Tay, Kay Yaw; Au, Wing Lok; Tan, Louis; Ng, Adeline Su Lyn

doi:10.1007/s10561-020-09819-2

Cited by 6 publications

(6 citation statements)

References 29 publications

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“…We used the same questions as those used in a study of 122 individuals with neurodegenerative disease and 65 individuals with non-neurodegenerative diseases ( 4 ). In that study, 68% of those with neurodegenerative disease and 76.9% of those with non-neurodegenerative diseases indicated that they would not be offended if asked to participate in brain donation.…”

Section: Discussionmentioning

confidence: 99%

“…Brain donation helps to improve the understanding of diseases like MS that affect the brain. Signing up to be an organ donor does not include donating the brain.” We employed questions from a study conducted in participants with neurodegenerative and non-neurodegenerative disorders ( 4 ). We asked participants to evaluate five statements: (i) I would not feel offended if I were asked to participate in a brain donation; (ii) I am aware of the importance of brain donation for research; (iii) I believe research staff will handle donated brain samples properly and professionally; (iv) I would consider donating my brain for research; and (v) I would be agreeable to allow my family to make the decision whether or not to donate my brain for research.…”

Section: Methodsmentioning

confidence: 99%

“…A cross-sectional study of participants with neurodegenerative and non-neurodegenerative disorders grouped together participants with MS, stroke, epilepsy, headache disorders and other demyelinating disorders; the number of participants with MS was not reported explicitly. That study found that about half of participants would consider brain donation ( 4 ). Factors that positively influenced brain donation included altruism, religious motivation, while factors that negatively influenced brain donation included fears of being disfigured and perceived stress for family members ( 4 ).…”

Section: Introductionmentioning

confidence: 99%

“…That study found that about half of participants would consider brain donation ( 4 ). Factors that positively influenced brain donation included altruism, religious motivation, while factors that negatively influenced brain donation included fears of being disfigured and perceived stress for family members ( 4 ). The potential role of health literacy was not evaluated despite the importance of health literacy in effective communication, and understanding and processing of complex health-related information ( 5 , 6 ).…”

Section: Introductionmentioning

confidence: 99%

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Attitudes of people with multiple sclerosis toward brain donation

et al. 2023

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ObjectiveResearch directly examining brain tissue has played an important role in understanding the pathology and pathogenesis of multiple sclerosis (MS) and other diseases of the central nervous system. Such research relies heavily on donations of post-mortem brain tissue yet little is known about the attitudes of people with multiple sclerosis (MS) about brain donation. We aimed to assess the attitudes of people with MS toward brain donation, their preferences related to discussions of brain donation, and factors associated with attitudes toward brain donation including sociodemographic and clinical characteristics, health literacy and religiosity.MethodsIn a cross-sectional study, we surveyed participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry regarding their attitudes toward brain donation, reasons for participating or not participating in brain donation, and related communication preferences. We used multivariable logistic regression analyses to test factors associated with attitudes regarding brain donation.ResultsMost of the 4,520 participants were women (80.8%), self-identified as white (88.1%), with a post-secondary education, functional health literacy and moderate-severe disability. Sixty-two percent of participants would consider brain donation. Factors associated with considering brain donation included female gender, having a post-secondary education, being physically active, having moderate-severe disability and more comorbidities, and alcohol intake. Seventy-five percent of participants indicated that they preferred to receive information regarding brain donations from physicians.ConclusionTwo-thirds of people with MS would consider brain donation. People with MS desire to hear about brain donation from their health care providers rather than other sources.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Attitudes of people with multiple sclerosis toward brain donation

et al. 2023

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“…While cited as a benefit, recurring references to ‘avoiding waste’[ 11 – 13 , 16 , 21 , 24 , 33 , 38 , 39 , 41 , 42 , 44 , 45 , 55 ] are interesting when one considers the harm that could be caused by refusing brain donation. While there are exceptions, broadly speaking, people with a metastatic cancer diagnosis or who have received a systemic form of chemotherapy are unable to donate tissues for transplantation purposes in Australia [ 64 ].…”

Section: Discussionmentioning

confidence: 99%

Understanding the value of brain donation for research to donors, next-of-kin and clinicians: A systematic review

Griffin,

Bowen,

Walker

et al. 2023

PLoS ONE

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Purpose Post-mortem brain donation affords the opportunity to characterise disease by exploring global neuropathological changes. Such opportunities are essential to progress knowledge of CNS tumours such as Glioblastoma. A comprehensive understanding of the experience of consenting to brain donation is crucial to maximising consent rates while providing patient-centred care. This review aimed to synthesise the reported facilitators and barriers according to potential donors, next-of-kin (NOK) and clinician respondents. Design Database searches included Embase, Medline, PsycINFO, Psychology and Behavioural Science and Scopus. Search terms focused on motivations, attitudes and psychosocial experiences of brain donation. Exclusions included organ transplantation and brain death. All studies were assessed for quality and validity using tools from the Joanna Briggs Institute. To determine perceptions of benefit and harm, a method guided by the thematic analysis of Braun and Clarke was employed to reflexively assess and identify common themes and experiences. Results 40 studies (15 qualitative, 25 quantitative) were included involving participants with paediatric cancer, neurodegenerative and psychological diseases. Perceptions of benefit included benefit to future generations, aiding scientific research, avoidance of waste, improved treatments and the belief that donation will bring consolation or aid in the grieving process. Perceptions of harm included a perceived conflict with religious beliefs, disfigurement to the donor, emotional distress at the time of autopsy and discord or objections within the family. Conclusion Brain donation can afford a sense of purpose, meaning and empowerment for donors and their loved ones. Careful strategies are required to mitigate or reduce potential harms during the consent process.

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Promise and challenges of dystonia brain banking: establishing a human tissue repository for studies of X-Linked Dystonia-Parkinsonism

Fernandez-Cerado¹,

Legarda²,

Velasco-Andrada³

et al. 2021

J Neural Transm

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X-Linked Dystonia-Parkinsonism (XDP) is a neurodegenerative disease affecting individuals with ancestry to the island of Panay in the Philippines. In recent years there has been considerable progress at elucidating the genetic basis of XDP and candidate disease mechanisms in patient-derived cellular models, but the neural substrates that give rise to XDP in vivo are still poorly understood. Previous studies of limited XDP postmortem brain samples have reported a selective dropout of medium spiny neurons within the striatum, although neuroimaging of XDP patients has detected additional abnormalities in multiple brain regions beyond the basal ganglia. Given the need to fully define the CNS structures that are affected in this disease, we created a brain bank in Panay to serve as a tissue resource for detailed studies of XDP-related neuropathology. Here we describe this platform, from donor recruitment and consent to tissue collection, processing, and storage, that was assembled within a predominantly rural region of the Philippines with limited access to medical and laboratory facilities. Thirty-six brains from XDP individuals have been collected over an initial 4 years period. Tissue quality was assessed based on histologic staining of cortex, RNA integrity scores, detection of neuronal transcripts in situ by fluorescent hybridization chain reaction, and western blotting of neuronal and glial proteins. The results indicate that this pipeline preserves tissue integrity to an extent compatible with a range of morphologic, molecular, and biochemical analyses. Thus the algorithms that we developed for working in rural communities may serve as a guide for establishing similar brain banks for other rare diseases in indigenous populations.

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Patient attitudes towards brain donation across both neurodegenerative and non-neurodegenerative neurological disorders

Cited by 6 publications

References 29 publications

Attitudes of people with multiple sclerosis toward brain donation

Attitudes of people with multiple sclerosis toward brain donation

Understanding the value of brain donation for research to donors, next-of-kin and clinicians: A systematic review

Promise and challenges of dystonia brain banking: establishing a human tissue repository for studies of X-Linked Dystonia-Parkinsonism

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